a guy and a bee

He fully understands day and night!  He is eating well during the day (almost every hour) and sleeping well at night (being woken up to eat). They are working on getting him onto a more consistent and less frequent eating pattern so he has more food (calories, protein, sugar) in his system at a given time. His blood sugar is doing great!

He is now on a medication to lower his bilirubin. They will do some follow-up tests Saturday morning to determine how long he will remain on that medication. 

He remains on his blood thinner. The repeat ultrasound to look at the clot is scheduled for August 14.

Overall, he is doing much better and we may be able to get him home soon. We will most likely not post an update until the tests come back on Saturday. 

Blood sugar doing well. PICC line was removed today. Ate 55mL of his bottle; only 5mL had to go via tube. Has to get to 60mL every feeding by bottle to go home. 

Got a bath last night. His hair was super fuzzy today. And he smelled so good.

Blood sugar is holding steady. They are moving to only checking it twice a day…finally some relief for his heels. 

Food has increased to 65mL every three hours. He gets tired and doesn’t eat it all each feeding, resulting in the leftover being administered via feeding tube, which is prolonging his stay, in part. He has to be able to eat consistently every three hours by bottle to be discharged. 

His bilirubin and TSH (impacting the liver, gallbladder, and thyroid) have been decreasing but are still higher than normal. Abdominal ultrasound came back normal, but they are looking to run some more tests to figure out what is going on/if he has an infection. More answers on that later in the week. 

BBA: He has been off glucose for five hours and blood sugar is remaining steady. He continues to eat well. Waiting on results of an abdominal ultrasound. Bilirubin dropped today on its own, negating the need for the medication they were going to start (yay). 

BBB: BBB got his first bath tonight. His hair is fuzzy again, reigniting the competition with BBA on who has better faux hawk potential. 

They are getting ready to turn off all IV fluids. Please keep your fingers crossed for an uneventful afternoon. More later. 

Blood sugar holding steady. Increased his calorie intake. Starting him on a medicine to address his bilirubin. Blood thinner is working well. 

Lots of tests scheduled for tomorrow morning. 

Made it for rounds today. Medical team was very optimistic about his progress and decided to challenge him today, giving him more food per feed and dropping his glucose significantly. And he met the challenge like a champ!  May be weaned entirely off of the glucose by tomorrow afternoon.  

Several tests scheduled for Friday morning to assess bilirubin concerns and decide on a final plan. 

Apologies for no update yesterday. It was a good day though. BBA was drinking bottles like a champ and was awake and alert when we were both there for visits. BBB attended his first Monday night dinner and was so enthusiastic about the outing he slept through the whole thing. 

Today, BBA was taken off all nutritional supplements (a good thing) and his blood sugar was holding steady while eating 60mL every three hours!  Still on glucose and blood thinner. Antibiotic ends tomorrow. 

Now the waiting game begins … as long as he has a consistent blood sugar reading and eats by bottle every three hours, they will wean him off the remaining glucose. Once off, he will need to maintain his blood sugar and eat well for several days for them to consider transfer/release. He can come home on the blood thinner if everything else is ok. Fingers crossed his system is up to snuff. 

Slept well overnight and looks great. Housed a bottle while I was with him and was an excellent snuggler. Looked less yellow, but his bilirubin had yet to be retested for the day. 

Also a very proud moment for the situation we are in…I got pooped on!!!!  His belly was down five centimeters from its high last week. It seems like the antibiotic and his system overall are working well. 

Belly rigidity seems to be improving and less concerning for the team. Feeding tube was back in but only to be used if he wouldn’t feed out of a bottle. He was starting with 10 ml’s to see what’s happening late this afternoon. This was the first test to see if it’s better and resolving. Will still get the baby gatorade (vitamin and glucose drip) for now. Bilirubin continues to be on the higher side and might be the next and hopefully final hurdle.